HI. I have been diagnosed with P.A. for 13 years. My only initial symptom was tiredness but as my father also had P.A. I was tested and found to have low B12 levels and antibodies to parietal cells and have since been on 3 monthly injections. I now also test positive for antibodies to intrinsic factor. Over the last 12 years I have suffered from heartburn now and then which can persist for weeks on end and then disappear for many months. In the past I have been given omeprazole, lansoprazol and ranitidine, none of which have ever helped and the heartburn has only ever improved slowly after stopping these medications. I have had several gastroscopies over the years which have been normal and a gastroenterologist told me I probably have too little acid rather than too much. For the last two years, since a bout of mild pneumonia I have had excess mucus in my throat and stuffy nose, uncomfortable ears and sticky eyes, and intermittent sore throat. An ENT doctor told me this would be due to reflux and told me to take gaviscon advance for 6 months. I find that when i take the gaviscon, I start again with heartburn and burping, but have tried it as she said it would protect my throat. I have stopped it again but my heartburn remains. I took the pepsin sputum test which came back negative so I do not know if my congestion issues are really related to "silent reflux". I have also had mild pins and needles now and then over the years but for over a year now this has been bad mainly during the night in my arms. My doctor thinks this will be caused by a neck problem. I have had blood test relating to thyroid and liver function and these have been normal. I was told my B12 levels were also normal. What i want to know is, could my pins and needles be related to my P.A. even though it is a relatively new problem and I have my injections regularly? Also is my congestion down to reflux? (I have had lung function tests and xrays which were o.k.) How likely is it I have low stomach acid causing the heartburn and how can I remedy this? I am sorry this post is so long I just want to feel more comfortable and be able to sleep at night.
Are my pins and needles, congestion a... - Pernicious Anaemi...
Are my pins and needles, congestion and heartburn related to my pernicious anaemia?
- Blood tests
- Vitamin B12
- Omeprazole
- Intrinsic factor test
- Lansoprazole
- Ranitidine
- Sputum test
- Pepsin
- Gaviscon
Hi,
I am not medically trained.
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/... (may need to be B12d.org member)
"have since been on 3 monthly injections"
Are you in UK?
Details of recommended UK B12 treatment info can be found in
1) BNF British National Formulary Chapter 9 section 1.2
bnf.nice.org.uk/drug/hydrox...
2) BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
UK B12 treatment for B12 Deficiency without neuro symptoms is
6 B12 loading jabs over 2 weeks followed by a jab every 3 months
For B12 deficiency with neuro symptoms it is
A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a jab every 2 months.
"pins and needles" are usually considered to be neurological so I am wondering why you are not on B12 neurological treatment regime. Do you have other neuro symptoms?
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Unhappy with Treatment (UK info)
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Other UK B12 articles
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
BMJ B12 article
NICE CKS
cks.nice.org.uk/anaemia-b12...
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Thank you for your reply. Today I read the book What you need to Know about Pernicious Anaemia and was glad I did.
I remembered that I was told a year or so ago that my folate levels were low and was put on folic acid for a while. I am wondering if my folate levels are low again and this is the cause of the pins and needles. I didnt have this symptom before being diagnosed with P.A.13 years ago. I have had pins and needles now and then in recent years but only persistently for the last 14 months or so. I am going to go back to my gp and ask about folate again.
I'm also not medically qualified and this forum isn't a substitute for professional medical advice.
Low stomach acidity as a result of the PA is a possible cause of low stomach acidity - which can cause symptoms such as heartburn and reflux. (Think this is because a certain amount of acidity is required to get your body to stop producing gastrin and without this bile will continue being produced when it isn't needed).
The pins and needles may well be down to problems with nerves in the neck - sleeping in a neck brace may help. If it's also related to numbness in the hands then it could also be related to carpal tunnel - which can be corrected by keeping the wrists straight - with or without the help of wrist braces. Either could be related to PA - meaning that you are under-medicated at 3 months but this is being masked because the problem is now about the transfer of B12 between blood and cells rather than getting B12 from your gut to your blood.
Do you know what tests you had in relation to thyroid function? and what the results were. Just going on TSH is a long way from telling the full story.
Thank you for your reply. I am planning to go back to the doctor. I am going to ask if my folate levels might be the cause of the pins and needles as i was told a year or so ago that my levels were low and was given folic acid for a period of time. I never had this problem before the diagnosis of P.A.and commencement of B12 injections 13 years ago and i saw in the Martyn Hooper book that symptoms shouldnt get worse after treatment, although I will also ask about frequency of injections. Thanks again.
Hi again,
"I am wondering if my folate levels are low again"
Folate Deficiency
patient.info/doctor/folate-...
Have you had recent tests for ferritin ( a form of stored iron in body) or other iron tests and a full blood count?
Iron tests
labtestsonline.org.uk/tests...
labtestsonline.org.uk/tests...
FBC
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Thyroid Disease
In UK, doctors sometimes only order a TSH test which won't give full picture of thyroid function. Might be worth putting any thyroid results on Thyroid UK forum on HU.
thyroiduk.org/tuk/testing/t...
thyroiduk.org/tuk/testing/i...
thyroiduk.org/tuk/about_the...
PA is an auto-immune disease and having one auto-immune condition can increase chances of developing another. I hope your GP has excluded possibility of other auto-immune conditions.
Coeliac Disease
Have you ever been tested for Coeliac disease? in UK, testing for Coeliac Disease is recommended for anyone who has unexplained B12 deficiency, folate deficiency or iron deficiency.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood tests
coeliac.org.uk/coeliac-dise...
"could my pins and needles be related to my P.A"
PAS
Might be worth joining PAS and talking to them. They can offer support and info about PA. PAS can sometimes intervene on behalf of PAS members by writing letters and at very least can pass on useful info.
pernicious-anaemia-society....
" I will also ask about frequency of injections"
My personal preference when I had a query about treatment was to write a short, polite letter with query plus relevant info eg symptoms, test results, family medical history, extracts from relevant documents. See letter writing link in my post above.
My understanding is that in UK, letters to GPs are filed with medical notes so are a record of issues raised. Things said in an appt may be forgotten or not written down.
Info for GP
GP can find info on frequency of injections for those with B12 deficiency with neuro symptoms in
1) BNF British National Formulary Chapter 9 Section 1.2
GP will probably have a copy of BNF on their desk or bookshelf.
2) BSH Cobalamin and Folate Guidelines, treatment info about a quarter through guidelines
"I read the book What you need to Know about Pernicious Anaemia and was glad I did."
I gave a copy of above book to my GPs plus a copy of BSH Cobalamin and Folate Guidelines.
Is your GP aware that health professionals can join PAS as associate members for free?
There is a section for Health Professionals on PAS website that your GP may find interesting. See next link.
pernicious-anaemia-society....
"symptoms shouldnt get worse after treatment"
Inadequate treatment may increase chances of further deterioration.
b12deficiency.info/b12-writ...
PAS news item on Neurological Consequences of PA
pernicious-anaemia-society....
Most important thing I learned....
was to always get copies of blood test results. I learnt to do this after being told everything was normal and then finding abnormal and borderline results on tests.
Access to Medical Records (England)
Thank you so much. i have an appointment with my g.p later and i have written notes and questions and intend to leave her with a copy of these.
Hi,
Good luck with your appt. I hope you will update this thread at some point or write a new thread.
Hi again. My various blood tests came back normal apart from Vitamin D was low again. I was given my injection 4 weeks early and the nurse said that our surgery will give injections more frequently if needed which is good to hear. I am being sent for an mri scan on my neck in case this is the cause of the pins and needles as i have had a disc bulge previously. My persistent heartburn did disappear for a few days but is back again. I might try apple cider vinegar if it continues to persist.
Hi,
"the nurse said that our surgery will give injections more frequently if needed"
Are they going to increase the frequency of your injections permanently or was having your injection 4 weeks earlya one-off?
As I mentioned in my first post,
UK treatment for B12 deficiency with neuro symptoms is,
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
GP can read this in BNF and BSH Cobalamin and Folate Guidelines (links to these in my first post).
Thanks for your reply. I only just saw it. I do not know yet if my injections will be regularly more frequent. I have just had an mri on my neck to see if my pins and needles are related to a neck problem. A few years ago I had an mri which showed a minor disc bulge to my neck and received some physiotherapy. My gp has arranged for me to have more physio on my neck starting later this month. I suppose i will wait to see what the mri shows. I dont think i have any other symptoms which could be related to the pernicious anaemia. My indigestion has improved since stopping the Gaviscon. I dont understand why people with P.A. are still prescribed antacids if they have low acid levels but am pleased that I know that these are the wrong thing for me.
Hi Sue. I cam across your thread when I was looking for something else. I have PA and like you have been suffering from reflux type symptoms. I also have globular sensation, excess mucus, feeling like something stuck in my throat, terrible and occasionally a dry cough which I cannot get rid of (it is NOT COVID). I also have horrid thoracic pain, retrosternal pain and pain across my shoulders and in my shoulder blades. I am about to undergo investigations for LPR (silent reflux) as after having every other tests and considering my symptoms that is what we have left. I suspect this might be the issue and I have been taking Gaviscon Advance prior to examination and I must say it is helping.
The received wisdom is that acid reflux is not associated with PA (and indeed cannot be due to the lack of stomach acid in PA patients). In that same way it was previously thought that PA patients were protected from diseases such as Barrett's oesophagus again because PA sufferers do not have sufficient stomach acid. That has found to be not correct and a case reported on NCBI has demonstrated this to be the case (although rare). I don't have the reference now but am sure if you search for it you will find it. This is highly reputable medical evidence.
Similarly, with silent reflux the culprit is not acid but pepsin and it is that enzyme (present in the stomach) when refluxed in to oesophagus (and in the case of LPR sufferers) up to the voice box (causing the globular sensation) which causes inflammation and referred paid (including to the thorax, shoulders, neck and ears. PPI medicines will not work to relive the symptoms since acid is not the culprit in the first place. The first line of treatment is diet (do not consume acidic foods) and avoid alcohol, especially spirits and white wine.
The second line of treatment is an alginate such as Gaviscon Advance. the coats the oesophagus and provides a protective froth over the stomach contents so that if reflux does happen it de-activates the pepsin and hence the damage (and indeed all the other nasty symptoms that go with it). So that is why you have been prescribed Gaviscon Advance and I think that is probably appropriate although I am not a medic. I say appropriate because it is certainly working for me.
The third line of treatment is fundoplication where they wrap a portion of your stomach around the lower oesophageal sphincter (LES) to tighten it and prevent reflux. Sounds terrible and I hope I do not need it but at least is an option that seems to work.
I hope you are in a better state now 3 years down the line but I share this info in case there are others who have been struggling.
Autoimmune Atrophic Gastritis and Pernicious Anemia diagnosis 
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Pins and Needles ...?
